Last reply 2 months ago
Coping with diagnosis

Hi, I was diagnosed with MS a few weeks ago and I’m really struggling to cope with this all. I’ve always been a person who struggles with ups and downs emotionally and this has turned my world upside down. My family have been brilliant but as I’m single and still living at home I’m terrified I’m now never going to gain independence and I no longer look forward to what the future holds. I feel very down all the time and I’m struggling to keep my head above the water. Does anyone have any tips or stories as to how they coped with diagnosis?

Thank you xx

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stumbler
2 months ago

Hi @georginey and welcome. This is a big shock to you, so my advice is to sit down and breathe slowly.

A diagnosis of MS should not stop you from living your life. MS is not a terminal condition and is not an express, one-way ticket to a wheelchair. It is not the condition that it used to be, as there are now various treatments to manage it.

So, read up about MS, as knowledge is power. I know you’ve started researching as you found us. But be careful of Dr. Google, they can find horror stories which are completely out of context. Stay with creditable websites, like the MS Society and MS Trust.

In the meantime, live a healthy life, with a healthy, balanced diet AND avoid stress,

Post any questions you might have here and we’ll do our best to answer them


georginey
2 months ago

@stumbler – I think me doing research is the problem in a way. I get a bit overwhelmed. I’m so glad I have found this website though. I come from a small island so it’s good to be able to reach out to others x


vixen
2 months ago

Hello @georginey, I’m glad you’ve found this site. Alomost everyone on here will have been right where you are now, and so will understand. One of my main pieces of advice would be not to rush any decisions, or panic about the future. You will need to treat yourself with kid gloves, and allow lots of time to process this fully. I have posted a few times, that the main thing I did at first was to allow myself 25 minutes a day of brooding and fretting. Then I’d make myself snap out of it, and if negative stuff crept in, I’d tell it to wait until tomorrow’s 25 minute session! I also kept a log-to-self about what I was thinking and feeling. Look back at it now, two years later and almost don’t recognise myself.

You must still aim to do everything you want to do in life, nothing changes that. Sometimes, the journey might take a different route. The future is looking more hopeful with every passing year, as there is so much research and progress taking place. Keep your spirits up. It might sound weird, but there are way worse afflictions in life. And living at home is probably the best thing for you right now. Take every bit of indulgence and care that you can, you need to feel safe and loved right now. You will be OK. You will get through this. Don’t forget to post any questions! X


stumbler
2 months ago

@georginey , it’s a not so small island. According to our map of member’s locations, you are our 4th member from the Isle of Man. You can check here:-

https://shift.ms/map

And this map only show those members who have shared their location…….


marcyg921
2 months ago

Hi,
Like yourself I was diagnosed and my world was turned upside down (made a few threads on how depressed I felt asking for advice) and you know I was also scared for the future and it was so hard to talk to anyone because I always felt like they just didn’t know what I was going through but thanks to this site I got alot of stuff off of my chest.
Now as for what you can do. There’s a ton of treatments available out there (I had Lemtrada) and there’s tonnes of things you can try (diets etc) but honestly the one thing you need to give yourself is time. The road to acceptance is a long one and you’ll be going through a wide range of emotions but eventually you will get to the point you realise that MS doesn’t need to stop you from doing anything with your life.
I’ve been diagnosed for about 2 years now and let me tell you it does get better and if anything for me, MS was a wakeup call to stop wasting my life and actually start living. I’m currently in the process of moving into my very first home (so you can still have independance), I go all across the UK to watch shows which I didn’t do before and I’ve even joined the gym and my aim is to do the Great North Run next year.
The road for me was a long one but I have had help along the way. I’ve had to go through sessions of physiotherapy, talking therapy along with multiple hospital treatments and I’m still not nor likely will I ever be 100% because the damage MS has caused me but this is my life and like hell will I let this condition rule me.

I’ll send you a friend request so if you ever wanna talk then feel free to message me or anyone in the forum. There’s loads of help out there for us with MS so use it to make your journey as smooth as possible.


grandma
2 months ago

@goerginey I’m one of the old codgers. Have had the beast for 26 years, but it is no longer the life sentence. There are so many DMT’s which there wasn’t when I was dxd. They told me it would take 10-15 years for rrms to become spms, it took 23 so I’m not complaining. Was on the original BetaInferon trial 25 years ago when it first came out, took it for 23 years until it became soms 18months ago, now take .Tecfidera. Your ms team will offer a DMT that suits your age, type of ms, lifestyle etc., but like everyone says don’t rush, have a cuppa, have a breather, sit down and take a deep breath. We’re always here for a natter, a moan, a cry, a celebration, a rant, whatever you want, we don’t judge and we’re always here, and remember there is no such thing as a silly question with ms.😍


criswell
2 months ago

Hey geoginy,don’t worry too much. There are alot of good medicines for MS out there today and many more in the pipeline. I was diagnosed 35 years ago when there were none but I am still doing fine.


edmontonalberta
2 months ago

@georginey

Much as I agree with Stumbler 99% of the time, this time I disagree. Isle of Man has a population below 100,000 – this is people ranging in age from babies to their deathbed. How anyone could find a great “partner in life” from such a small pool of talent is beyond my comprehension…

Canada has a population of over 30 million people – I traveled & lived extensively across the country before meeting the perfect woman. Got married; Donna got sick & died five years later. Second time around I found my partner 1/2 way around the planet – seriously. Jozefina is an absolutely impressive Babe who fulfills me.

My suggestion is to live your life to its’ fullest – do whatever makes you happy; truly happy. Get a proper education & career; make solid friends & keep them. Ensure you are an interesting woman with solid morals & values. I would make these recommendations whether you were perfectly healthy of had MS.

Just my opinion…


cameron
2 months ago

Great advice from everyone. All I can add is – think of your priorities. You’ll want to keep independent so you need to be as financially secure as you can be. Career choice is therefore really important and I totally agree with @vixen: fret/worry/obsess about the MS for half an hour a day – that leaves you enough time to concentrate on what matters. You don’t say what line of work you’re in and/or whether you’re happy in it. Now could be the time to set some goals career-wise, whether that’s staying with what you do and saving for the future or maybe expanding your job role via training – or even changing course if that’s what you’d really like to do. Whatever the scenario, work and financial independence are (IMO) even more important for us MSers than for the general population. xx


fingersandtoes
2 months ago

Hi @georginey and welcome.

I was diagnosed in November last year, although my road to diagnosis was long. Getting diagnosed came as a relief though since then I have been a lot more preoccupied with my diagnosis, when before I could ignore it a lot more (well, until I had a nightmare year with three relapses last year).

Between my first relapse 5 years ago and getting diagnosed, I bought my first home and am living blissfully alone for the first time. There’s no reason you can’t be independent. My mum has been staying for the past two months which has only confirmed that life is so much easier when I only have myself to look after!

Maybe you should consider getting an MS buddy through this site? Also get on social media. I’ve met so many inspiring people with MS through Twitter and Instagram. All getting on with living their best lives.

It’s ok to take your time to process this change in your life. Like I said I’m still processing. My career has taken a back seat this year while I figure things out. I’ll get there in the end and so will you.


fingersandtoes
2 months ago

Also I follow the Overcoming MS programme. If you go on the website you can order a free copy of the book. It takes a while to wade through but is full of useful information whether you decide to follow the programme yourself or not. I feel like it gave me back a sense of control over my MS and helped me make informed decisions.

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